Light from Disability

This was written for Friends Journal’s March 2016 issue; unfortunately, they chose not to publish it.


June, 2005. I’m sitting at my computer, taking an online quiz about what religion best matches my personal beliefs. Raised as a Roman Catholic, I had left the church 7 years prior due to theological disagreements (particularly the importance of the Pope, the discrimination against women, and the church’s stance on abortion and LGBT rights). Since then, I had been searching for a new religious home. Taking this quiz was a last ditch effort. I’d attended other Christian churches, but none of them felt like communities I could be part of. The results of the quiz came back as 100% Liberal Quaker. I’m excited and eager to find out more about this religion, so I search for a Meeting… only to find the nearest one is half an hour away, which is further away than I can drive.

I’ve had juvenile Rheumatoid Arthritis (jRA) in all of my joints since I was an infant. Growing up with jRA, the disease made me an automatic “other”. Juvenile Rheumatoid Arthritis (also known as “juvenile Idiopathic Arthritis”) is an autoimmune disease, which means the immune system targets part of the body. JRA is an inflammatory condition that causes swelling and pain primarily in the joints and musculoskeletal system; left untreated, this disease can result in permanent joint deformities and often, as in my case, can lead to disability. When I was growing up, the primary treatments available were large doses of aspirin and physical/occupational therapy. In elementary school, I took the special ed bus and often needed the assistance of an aide. In middle school, I often had physical therapy during and instead of recess.

While I never hesitated to tell people about my jRA—it was impossible to hide it from people I would be spending a lot of time with—I always felt like it was something I had to “overcome”. Not only as an obstacle to my education, but as an obstacle to friendship and relationships. My jRA was something I had to make up for.

Except for 6 days every summer, when I went to Arthritis Camp. Camp Dartmouth-Hitchcock was a summer camp in New England only for kids with arthritis or similar autoimmune conditions like lupus. For those 6 days, my jRA wasn’t something to overcome; it was something that united us. It made me a part of the group instead of apart from the group.

At Arthritis Camp, each evening before heading off to bed, we would sit in a circle in silence. We met in a big, old, drafty barn. The smell of wood and age became as soothing as the people around me, my friends and family for those 6 days. And out of that silence, sometimes, we would speak. Though camp wasn’t explicitly religious, I had never felt Spirit’s presence, love, and acceptance more powerfully than in those nightly circles.

Every year at camp, an award was given out to the camper that best exemplified the spirit of Dr. Joshua Burnett, who founded Arthritis Camp. Every year, I dreamed of winning that award; up until my last year at camp, when I gave up on winning the award and focused instead on being truly present with my fellow campers and for each of my last moments at camp. It was August, 1999; I was 17 years old. My right wrist, which would be my first joint surgery just the next summer, was starting to fail. I had just finished my junior year of high school, which had been one of the most painful years of my life up to that point.

The award was given out at a formal dinner the last night of camp. My last year at camp, the director stood and read the award:

“Dr. Joshua Burnett, a family physician with an ear for the need of his patients, became the first Rheumatologist in the state after hearing of a need. He willingly returned to school to learn to provide this specialized care for this patients. As a Staff Rheumatologist at Dartmouth-Hitchcock Medical Center he saw the need for a camp for children with arthritis. A place they could go and enjoy camping as any other child their age. It was his unselfish gift of caring for others that we honor with this award.

“Each year one camper is voted on by their peers as the camper that exemplifies the spirit of Dr. Burnett. This camper is caring and unselfish in his or her interaction with their fellow campers.”

And then, she said my name, and I became overwhelmed with joy and gratitude. I felt that being given that award showed me the best person I could be. It showed me how the power of true community could support and change a life.

That night, as we gathered one last time in the circle, a fire gently lighting the otherwise dark barn, I was filled with joy and despair. How could I leave this place? Would I ever find such a community again? One by one, we lit our candles from the flame of the fireplace, passing our light from one to the other. We spoke our truths. We cried together. And I knew that the strength I was given at Arthritis Camp would empower me for the rest of my life.

It was September of 2005 before I was finally able to convince my husband to drive me to the nearest Friends Meeting—Third Haven Friends Meeting in Easton, Maryland. We drove through their driveway, surrounded by pine trees, sunlight sparkling through the needles. We parked and followed the small stream of people into their old Meeting House. And when I saw the old Meeting House, my breath was taken away.

Walking into that building, that 300+ year old wooden building where sunlight streamed through open windows and doors, felt like returning to Arthritis Camp. That building felt just like the barn at camp. It smelled like home. I felt like I was home.

We sat, and I struggled to contain my joy. Words rose out of the silence, just like words rising at those evening gatherings at camp. These words were powerful. They were authentic. They struck that inner chord in my soul that knows Truth. The hour passed quickly, and I knew that finally, I had found my religious home.
But on the ride home, it become obvious that my husband had not had the same experience. While I found the silence liberating, he found it boring. He agreed to drive me to Meeting for Worship again, but he would not be attending with me. I was disappointed. I wanted to become a part of this Meeting, to once again participate in that communion of Spirit.

I managed to convince my husband to drive me to Meeting one more time. And at that Meeting for Worship, two Friends—two strangers—offered to drive me when they heard about my need for a ride. These Friends became friends, and they drove me to Meeting for several years. It was their willingness to offer assistance that allowed me to join Third Haven Friends Meeting as an official member in August, 2006. Though these f/Friends have since moved away, my husband has seen how important attending Meeting is to me and is more willing to drive me than he once was. Being a member of Third Haven has challenged me to live up to the Quaker testimonies, to question, to believe, and to be part of a community that is not always perfect, but one in which the Light is yet present.

Though it’s been many years since I last attended Arthritis Camp, the person I was during that final week of camp showed me the best person I can be. Each day, I try to live up to that award. Not doing so would mean I am not honoring the camp that showed me what true community, love, and caring could be like.

For myself, I have that award to strive towards. For my Meeting community, I have the loving, accepting, and caring camp community to work toward. It is the combination of these two elements, the divine and the active, that I most wish to share with my Meeting community.

And it is my disability that made this possible.

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Filed under arthritis camp, belief, meeting for worship, quakerism, third haven, worship

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